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Post by leftyeric on May 22, 2019 20:43:20 GMT -7
#$@*% phantom pain!
Just had to say that "aloud" in the presence of some people who might understand what I'm talking about.
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Post by leftyeric on May 22, 2019 20:44:06 GMT -7
It's only a day or so out of every couple months, but yikes, that day!
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Post by snowyh on May 24, 2019 7:31:58 GMT -7
What, if anything, do you use to mitigate the pain?
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Post by leftyeric on May 24, 2019 12:55:03 GMT -7
Years ago, I used to take Gabapentin (it was called "Neurontin") but I came to believe it really wasn't having any effect, so I gradually stopped. After I stopped, the occasional phantom pain sessions did not seem to come any more frequently or be anymore severe. These days sometimes I'll have a glass of wine. I wouldn't say it cuts through the pain, but at least it makes me less stressed about _being_ in pain. Since the peak of a pain session seem to last only for 12 hours or so, and then only every once in a while, the thing I most like to do is take a sick day, try to totally de-stress, reduce commitments to a bare minimum, and just kind of calmly ride it out. I tell myself it's not really real. Well the pain is real, but it's not an indicator that something is really breaking down. Then, it's basically not that big a deal. The only times when it really drives me nuts (and causes me to post a comment like the one above!) is if a spike in the pain comes on when I have something to do, some unavoidable responsibility, especially if it involves needing to concentrate. It's really frustrating to try to stay on task when every 45 seconds it feels like someone is stabbing me in the wrist, (a wrist I don't even have).
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Post by snowyh on May 24, 2019 18:30:08 GMT -7
Wow, Eric, reading your story sounds much like my experiences with phantom pain, except instead of wine I use CBD oil to relax and help take the edge off. And the prescription being replaced is Lorazepam (Ativan) instead of Neurontin. And what you describe as being stabbed with a knife every 45 seconds feels to me like being hit with a cattle prod every 2 minutes. That's essentially the same thing, right?
It's interesting that you mention your wrist being the focus of your pp. I, like you, am missing everything up to and including my shoulder, but my phantoms strike from the fingertips to the wrist only. Hmm...
Helen
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Post by leftyeric on May 25, 2019 11:16:11 GMT -7
Yes, sudden shock/stab sounds like basically the same thing. Basically PP waits until I have just started to relax from the previous zap and maybe let my guard down a tiny bit and then, zap, again. Could you say anything more about CBD oil, basically how you use it, what is effect? Here in the fine City of Boulder there are all manner of related things available, in all possible strengths and so on, and heck if one wants one can legally add THC to the mix. But old fuddy-duddy that I am, I haven't explored any of that.
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david
New Member
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Post by david on Jul 10, 2019 3:44:46 GMT -7
Hello, Whatever you do to avoid pain,don't take drugs,you don't need them. Deep breathing and positivity kills any phantom pain. I've been an amputee since 2002 and personally I think the whole Phantom Pain story is bullshit,I don't mean to hurt your feelings,just wait until you get used to being an amputee,it can take about 2 years. All the best , David
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Post by snowyh on Jul 11, 2019 8:50:18 GMT -7
Deep breathing and positivity kills any phantom pain. I've been an amputee since 2002 and personally I think the whole Phantom Pain story is bullshit,I don't mean to hurt your feelings,just wait until you get used to being an amputee,it can take about 2 years. David, I'm guessing any phantom pain you have experienced was extremely mild--lucky you! Please appreciate, however, that not every amputee has the same pp experience as you. Helen (near-50-yr amputee)
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Post by leftyeric on Jul 12, 2019 2:52:42 GMT -7
Hi, David, I'm totally willing to believe that after two years, you had no more phantom pain. For my part, after two years, I had no more phantom pain most days of the year, except for those unpleasant few days when I do. As it turns out, today was one of those bad days. Mostly gone just now, though, which is why I'm even looking at the internet. I don't have Helen's 50-year experience, or your 17-year experience. But I'm pushing 15 years, and on my bad days, sure positivity and deep breathing both help, but I'm still kinda a wreck for a few hours.
Eric
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Post by stonecutter on Jul 16, 2019 15:51:06 GMT -7
Hello, Whatever you do to avoid pain,don't take drugs,you don't need them. Deep breathing and positivity kills any phantom pain. I've been an amputee since 2002 and personally I think the whole Phantom Pain story is bullshit,I don't mean to hurt your feelings,just wait until you get used to being an amputee,it can take about 2 years. All the best , David Woah now... Let's not talk crazy. Trust me when I say this: PHANTOM PAIN IS A VERY REAL SENSATION AND A REAL PROBLEM. Because you appear to be lucky enough to have not experienced it, doesn't make it any less real for those of us who do. I've heard of a few amputees who don't suffer from PP, however the overwhelming majority do. I have been an amputee since June 1994. That's 25 years now. I was 19 years old when my left leg was amputated therefore, my life as an amputee has been longer than my life with two legs. I don't have an ill-fitting prosthetic. The one I'm wearing at this very moment has served me well from 2012. My phantom pains set in at any time they want. For me, I've observed the following: - I am an irregular PP sufferer. I have them, on average, once every other month for a 24-48 hour period.
- Phantom pains were very intense prior to my revision surgery in February 2012. My amputation was the result of a traumatic crushing injury. I had permanent nerve damage and couldn't feel the bottom of my stump. When I was suffering from PP, it was very hard to concentrate and focus on what I was doing. It was to the point that I found it difficult to drive safely. The PP would claim my full attention. After the revision surgery (which shortened my stump) I regained feeling to the end of my stump. After the surgery, I still get phantom pains at about the same rate, however the individual pains are much less intense.
- Sleep while suffering PP is hard to come by.
- PP can set in at any time with no warning. I've been blessed with the sudden arrival of phantom pains in the morning / afternoon / evening / even the middle of the night when I haven't worn my prosthesis in several hours.
- Weather doesn't seem to correlate with the occurrence of phantom pains. (I've kept records)
- Barometric pressure doesn't seem to correlate with the occurrence of phantom pains. (I've kept records)
- Chiropractic adjustments can trigger phantom pains. (I've kept records). My chiropractor is yet to find an adjustment that makes them subside.
- My phantom pain feels like electric shocks. I've heard other descriptions from other amputees that don't match my sensation. Burning, stabbing, throbbing, etc.... Mine is a sharp shock.
- Pain hits in an instant and when the individual occurrence ends, the pain doesn't subside like pain does when you smash your finger. Instead, it goes away as instantly as it came.
- When I'm suffering from PP, they come and go at regular intervals for several hours.
- A TENS machine does disrupt the phantom pain process while it is running. As soon as the machine times out - phantom pains return.
- A hot bath (if in the winter) has been known (occasionally) to stop the pains.
- Constant stump massage temporarily subsides phantom pains.
- Vibration does temporarily subside phantom pains.
- I can take tylenol with no effect. In fact, I take tylenol for PP because my wife insists (even after 21 years) that I do so.
- I have never taken Gabapentin. I don't like to take even tylenol for a head ache so the thought of having to take a different drug does not appeal to me. I hope, for the sake of those who regularly suffer that it works for them.
I very much disagree with your assessment of 'bullshit' phantom pains.
Thanks!
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alexv
New Member
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Post by alexv on Mar 29, 2021 18:22:18 GMT -7
My RLA PP is very specific. I get P pain in my toes (specific toes); heel ; cramp in the whole foot.A Hopkins Dr. recomends Dexto cough medicine & lidocaine
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Post by stonecutter on Mar 30, 2021 11:32:35 GMT -7
Great time to update this thread...
In the wee hours of Tuesday of last week, I woke up with some moderate phantom pains (electric shock sensation). By moderate I mean, not overly painful sensations, but enough where I wasn't able to sleep. The next morning they progressively got more severe and were to the point where I tried to avoid driving because when they hit... they captured my FULL ATTENTION.
My usual methods of management - massage, TENS machine, heating pad, keeping my prosthetic on... not much helped with the exception of standing and constantly moving, which... is not sustainable, especially when not getting much sleep for a few days.
By Friday afternoon they subsided and I was able to get some decent sleep.
Yesterday (Monday of the following week) I had an online appointment and obtained a medical cannabis license. The practitioner recommends CBD for daytime and THC for nighttime. CBD - she recommended 8-30mg doses 2x per daytime hours and then 2-10mg of THC at night. Having never used cannabis before in my life... does this dosage seem right?
Product on order. It wasn't expensive as I thought it would be.
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Post by snowyh on Mar 30, 2021 18:57:52 GMT -7
The practitioner recommends CBD for daytime and THC for nighttime. CBD - she recommended 8-30mg doses 2x per daytime hours and then 2-10mg of THC at night. Having never used cannabis before in my life... does this dosage seem right? I am now successfully managing my PP with CBD oil in capsules (15 mg/capsule). I'm really spoiled now and use it for even the mildest PP sensations ("the tinglies"). My usual dosage is 2 capsules (30 mg total) to start, and then more (in 30 mg doses) if that doesn't do the trick. If I can tell it's gonna be a bad one, I start with 60 mg, and then take an additional 30 mg every 15 minutes until relief is achieved. The most I've ever had to take was 10 capsules = 150 mg total, and that was for a fierce PP episode. I've never used THC.
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Post by leftyeric on Mar 30, 2021 20:04:31 GMT -7
You probably don't want to start with 10 mg THC. It won't hurt you, but if you're not used to it you will likely feel weird. Maybe start with like 2.5 mg THC and 10 mG CBD say an hour before you want to go to bed. Don't wait until it's actually bed time -- it takes a while for most edibles to work Besides the pain relief, the THC might give you mildly weirder dreams, but that's not necessarily a bad thing, if you know what's causing them, they won't worry you. You can increase the THC as your practitioner suggests, if needed. My particular job and THC most definitely don't mix, if daytime phantom pain increases to that level, I take a sick day.
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Post by stonecutter on Mar 31, 2021 7:19:21 GMT -7
Thanks to the both of you. It was odd after getting the license and then signing onto the website and shopping for something that for 44 years of my life was illegal in Canada for recreational use, and really only medically available for the past couple of decades or so. And even when the medical use was happening the stigma attached... my goodness...
As a Shriner, I hang around with a lot of veterans who carry with them injuries sustained from their service. A small but stocky dude who was a submariner has had to have his neck vertebrae fused. A retired air force guy who has lower back vertebrae issues, joint issues (knees, hips). When the military started supporting the use of medical cannabis it was amazing to see how much it helped these guys. I was over at someone's place with one and when he knelt down to tie his shoe, I was amazed. Normally I would have expected to have to physically lift him back up, but he popped up like he was 25 years old! Between seeing that, and this thread in particular, I knew that I would be here one day.
Although the choices and methods on the website are abundant, I am going to be using the oil. Supposed to arrive at my doorstep today. I'll keep you posted.
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Post by leftyeric on Mar 31, 2021 17:28:18 GMT -7
Yes, please do keep us posted! And just to be clear, if the 2.5 mg THC is not working, then by all means try 5 mg, or 10. As I say, it won't hurt you, unless you are operating heavy machinery. Oh, or day-trading. No day-trading stock options after your 10 mg THC dose. But then, you shouldn't do either of those two things immediately after you pounded two beers on an empty stomach. And since you're a Canadian, I have to assume you've already had that latter experience.... But yeah, I hear you re the stigma. It definitely felt weird just walking into a store and straight buying the stuff.
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Post by stonecutter on Apr 20, 2021 12:04:46 GMT -7
I dunno folks... it's been a couple of weeks. Although I notice things like my joints (hip, surviving ankle and knee) are feeling better, I have had a couple of nights of pp since going on CBD daytime and THC nighttime.
My recommended dose is 8-30mg 2x/day CBD and 2-10mg THC. With the potency of the oil I've received, that translates to 0.31-1.15ml CBD and 0.11-0.53ml for the THC. It was weird because when I was interviewed when I received my license, she asked me nothing about how tall or heavy I am, which is normally how dosages are calculated, no?
Side effects are nil, with the exception that I wake up in the middle of the night with a very dry throat and need to have water bedside. I haven't felt any intoxicating effects associated with the THC with the exception of last night when I was woken up by the dog at 4:04 AM who needed an early morning trip to the back yard - turns out I was pretty dizzy and groggy (managed to keep it right-side-up though...)
But with the couple instances of phantom pain persisting, I might try another product, other than oil for the THC hit.
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Post by leftyeric on Apr 21, 2021 20:31:49 GMT -7
Hi, Trevor, I think the reason the prescriber didn't focus on your weight is that most people fall in the range of, what, say 125-250 pounds, sure some heavier or lighter, but mostly within that factor of two, whereas people's sensitivity to/tolerance for THC has a much wider range than a factor of two -- 2.5 mg of THC I feel pretty much but others only really notice 10 mg or more. I guess I'm saying, in the end no matter what you weigh you got to try different things, see how it works, how it makes you feel. (this variation in sensitivity from person to person was also true back in college, when it wasn't about easing pain, but about feeling buzzed!) If you're a big guy, or the dosages are not working, and not causing side effects, then try x1.5 wherever you are at. I would say that when it's working right for me, it's not like the pp is totally all gone, just that it's sort of blunted. I might wake up at 2 a.m and think "was that a twinge that woke me up?" and then 30 seconds later, yes there's another twinge, but it's dulled and I think, " so it's you, my old adversary, pp, but it's in the middle of the night and I'm sleepy and if THAT's your best shot, well I'm sorry but that kind of twinge is _not_ keeping me from going right back to sl.....zzzzzzz"
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Post by snowyh on Apr 24, 2021 10:13:57 GMT -7
Hey, Trevor, sorry to hear CBD/THC hasn't really worked for you yet. Are you getting your product from a pharmacy? A cannabis dispensary? Anyway, the dosage on the label should be backed by independent lab results--there's lots of fake CBD out there. I get mine from 2 reliable online sources, Bluebird Botanicals and Sunsoil, and have been pleased with the efficacy. Clear it with your prescriber first, but if there's no downside, I'd recommend experimenting with increasing the dosage as Eric suggested.
Helen
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Post by stonecutter on Apr 25, 2021 11:54:16 GMT -7
Heya. I'm getting my supplies from an online dispensary called Cannmart. They are linked with the company that provided the license.
Thursday and Friday nights, we were zapping right along with full-on phantom pains again. After getting up to re-dose with THC and then later some Tylenol, what saved the day was my TENS machine. Luckily I was off work on Friday, so I slept in, still connected to my TENS machine for a few hours, sleeping for 30 mins at a time as that's when the TENS machine times out.
I was careful to take my CBD doses during the day on Friday, but I *tripled up* my THC doses that evening. I took three doses of 1ml about 30 mins apart. Went to bed about an hour after that. Wasn't feeling intoxicated or anything, but did feel a bit tingly and foggy.
Did the same last night and re-ordered my supply (oil), plus some extras goodies (gummies and disposable vapes) which I hope to be more effective. I'll let you know how that goes.
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Post by leftyeric on Apr 25, 2021 18:14:10 GMT -7
Hi, Trevor, We're pulling for you! Eric
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Post by fommof on Jul 1, 2021 7:44:05 GMT -7
Strange thing, but all this time I thought the phantom pain had to do with real pain that gives you the impression that is caused by a limp that no longer exists (like the toes in my case, since I am an above-knee amputee).
The description of the pain as "sudden shock/stab" convinced me that I am dealing with phantom pain since the beginning. All this time I was calling it "stump nerve pain".
Good thing is that, although it was very regular and intense until a few months after the amputation, after that, it took several years until it reappeared. The last 6-7 years I have to deal with it one to three times a year (I guess, I am one of the lucky ones).
No patterns, no obvious reasons, I've been keeping statistics all these years, trying to understand what the heck triggers it (temp, humidity, stress, walking too much etc.) and I still haven't figure it out.
It may happen during the day, it may happen during night, or even when I am sleep.
Now. until recently (3 years ago) the only thing I could do is just wait for it to wear off. Of course, it can last for a few minutes, several hours or even half a day (pure torture, I couldn't focus on anything else).
I avoid drugs and especially opioids like the plague, but the pain is just too much.
Now, I am NOT a doctor so I can't give you guys any advice, but in my case the "fix" is to take one 1000mg Depon tablet (that's harmless) AND a Mesulid pill (careful with that, I wouldn't use it very often, in my case I take 2-3 of these per year) at the same time.
Works every single time BUT that combo (I think it's probably the Mesulid) makes me sleepy so I make sure when I take'em I don't have to drive etc.
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Post by leftyeric on Jul 1, 2021 12:27:14 GMT -7
Welcome, fommof! Thanks for this phantom pain tip! Have to say, I had never heard of depon or mesulid, those are not names you see in pharmacies in the United States, which is not surprising, as drugs are often marketed under different names in different countries. So I had to look them up on the web. If I understand what I read correctly, I think that main ingredient of depon is paracetamol, aka acetaminophen, aka "Tylenol", in the US. So you can buy that without a prescription anywhere in the US.
Mesulid is harder to find: it is a brand name for nimesulide, which is not available in the US; I think it never got approved here by our government. The internet echoed your cautions attitude, fommof: apparently Mesulid could be hazardous to the liver if you take it for prolonged period. It's always hard to tell from info on the internet: are these risks extremely rare, or are they a real cause for concern?
Anyway, it sounds like your tip is something I won't have the opportunity to try. But I'm interested to see if non-US readers of this forum have any luck with it!
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Post by fommof on Jul 1, 2021 12:41:17 GMT -7
Nice to be here leftyeric, thanks for the hospitality, mate!
You are correct sir, depon is paracetamol, I am pretty sure you have access of stuff that contains it in the US, it's pretty common and it doesn't even need prescription.
And you are right about the Mesulid too. I didn't even have to check it on the internet as the directions included in the box says it clearly. Still, it fits my needs since I only need 1-3 pills a year (several months apart each time) so in the long term I am pretty sure I'll be fine.
For people that are dealing with phantom pains more often, I would say, please, pretend I never wrote any of this.
To be honest, I would be interested in finding another drug (or combination) with the same effect, but I just haven't so far (not any non-opioids ones, anyway).
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Post by snowyh on Jul 8, 2021 9:31:17 GMT -7
I've always been a bit "high-strung" and realized after much study that my PP episodes were triggered by stress. My use of CBD oil (capsule taken orally) for phantom pain is evolving. At first I only used it when having a PP episode, but then I started realizing how many other unrelated symptoms were eased when I took it (anxiety, insomnia, TMJ pain, frequent urination), so I began taking it daily as an experiment, and the main benefit is that my daily PP tinglies* have so far not escalated into full-blown PP episodes... in fact, I barely have the tinglies at all any more. My current daily dose is 30mg. I suggest that any CBD oil you take be backed up by independent lab tests, because it's currently unregulated in the U.S.
Helen
*The "tinglies" feel like a low electrical current running through my phantom limb, but are not painful, and have been a constant post-amputation sensation. I can tell that I'm about to have a PP episode when the tinglies start to spike, eventually culminating in painful jolts that feel like I'm being hit by a cattle prod (I can only assume).
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